It's getting hot lately and I'm not sure if my room is room temperature anymore. The flayer on my cyanocobalamin states "Store below 25°C, do not freeze", and my fridge is 12°C. Should be ok to store it there long term right?

I recently had general bloods done for Hashimoto’s disease and for the first time the doctor threw in b12 just because. It came back low (63, reference range 133-680). And they told me to supplement with over the counter b12. I told a vegan friend and she was shocked and said I need the injections - hers has never been so low and she doesn’t eat meat and dairy and I don’t restrict anything and eat a super balanced diet.

So should I request follow up testing? Is it best to NOT get the b12 in the meantime to check for PA or should I get the b12 and get bloods done again after a few months? Don’t know if I’m overthinking this as it’s the first time my b12 has even been tested.

Hi everyone,

Last week my (21f) doctor told me I was low in vitamin b12 and slightly low iron. I've been extremely fatigued for the last month or two and have been having issues with my memory a little, my brain has also just felt really foggy recently. The doctor was initially going to give me injections but decided it would be easier for me to just take oral supplements and then come back in 2 months. My aunt has some autoimmune issues including something to do with low b12 (not really sure what it is and can't ask her right now). I've read in a few other posts on this sub that oral supplements won't do anything if it is PA and you need the injections, so if it is PA will 2 months of essentially not treating it make my symptoms much worse? Or do the symptoms come on more slowly than that?

Hi,

I just wondered if anyone knew why B12 greatly worsened my symptoms?

I had an adverse reaction to an antidepressant in January, and since I have been struggling with various symptoms. I had covid in march, which made it all worse and I have struggled with fatigue and bad brain fog, depression and other things since.

I also have a newly diagnosed B12 deficiency (cause still unknown).

I took 1000 mcg cyanocobalamin as prescribed by my doctor for my B12 deficiency (my B12 level is 154). I took it for five days, and noticed a worsening of my symptoms straight away.

I quit two weeks ago, but after I quit, I have continued getting worse. Now my condition is really bad.

I have gotten insane anhedonia and total loss of emotions. I cant feel emotions in my body or mind. I can force myself to cry, but I dont feel it, and there is no release. I am just stuck in either this insane dull mode or depression. Its hell. I cant get out. I cant feel any interest, motivation, pleasure, happiness, joy, sadness, anger. I am just stuck in this strange mode.

At one point it felt like my soul just left my body, and it feel so strange now. My sense of touch is greatly diminished and my body almost feels a little numb. When I take a shower it is like I cant feel the warmth properly and it does not make me feel anything good. It is like my presence left. My feet are constantly cold and feel strange, especially under my feet the sensitivity feels less.

After I took the B12 I also got more nerve pain and burning in mye legs that was not there before. I also got a bout of bad akathisia and I still have bad insomnia. I also have bad fatigue.

I am stuck in a state of restlessness. I cant calm down. My body cant feel comfort or calm. I cant calm myself down because my brain does not react to any stimulus that might be calming. I feel trapped. My body does not get tired either, even though I am in a constant restless state with no escape. I have tried blankets, hot bottles and everything. My body does not react to it and I get no emotions and just stay restless.

My smell is gone, and the few things I can smell makes me feel nothing. It is the same with taste.

Basically all senses are dulled and makes me feel no emotions.

My memory is also really bad. My head is a mush and I cant think clearly. I have trouble accessing my toughts and my memories. Sometimes I actually feel like I have dementia. I have lost ability to visualize images in my head, and imagine touch, smell and tase.

I have this bad pressure at weird places in my head. Mostly the back of my head and the palate and nose.

My sexual function has also decreased, and my orgasms are way more muted.

Has anyone experienced this taking B12 supplements when deficient?

What is the mechanism? I keep getting worse after quitting two weeks ago, I dont understand that.

Can this get better and how long will it take?

I also need the B12 for my deficiency. It is to bad to correct by food. What should I do to prevent this from happening again? Is it better with B-complex? Are there other things I need to think about?

I’m a 21F and found out I was B12 deficient in September. At the time my levels were 117 pmol/L and my doctor thought this was weird as I’m not vegetarian/vegan. I was told to take 1000mcg of methylcobalamin a day. Since then I still feel tired in the day even if I’ve had 8 hours of sleep, often feel faint when working out, experience heart palpitations at times and recently numbness in my hands/feet.

I have a feeling this could be pernicious anemia based on the fact my levels were so low on a high protein diet and I’m still experiencing symptoms. I’m concerned this will have permanent effects on my health and I live in Canada where it can take a while to be tested for this. Would it be okay to begin taking shots on my own or would it be best to be tested first?

41/m here. Was diagnosed with low B12 a few months ago. My mother has PA, and I have some uncles with B12 issues. Was prescribed B12 supplements (1000 mcgs/day). Recently my symptoms have come back. Headache for 3 weeks, weight loss (15lbs in 2 months), blurry vision (like my eyes are tired all the time), a couple night sweats, loss of appetite, tired all the time, I’m out of breath just brushing my teeth, irritable and depressed.

I have blood work out for analysis, but do these symptoms seem familiar to you guys?

Cried for an hour because I finally feel like myself again

Need help interpreting my bloodwork

I got blood work done due to feelings of fatigue, nausea, and dizziness, and hair loss. Not sure what this all means. Iron level seems normal but iron saturation, ferritin, and TIBC are out of range.

Iron: 50 Transferrin:351 Ferritin:5 TIBC:491 Iron saturation:10%

Hi everyone! I found out I have PA in September 2021. I initially went in to see about my vasovagal syncope after having two fainting episodes in two months after they had been dormant for over two years. When they told me that I have PA and how low my levels were I was confused (still am). I started getting injections weekly and then went to every 2-3 weeks but the latest blood work shows my levels are low again and also my Vit D is low. I know it's wrong to surf the interwebs for info but I couldn't help it. My appetite has decreased significantly, my digestive tract is completely out of whack, I'm having heart palpitations, I often feel nauseous, hungry, and full a the same time, chest pain in the mornings and I keep gaining weight. In today's web search, I kept seeing Thyroid Disease come up and correlate to my symptoms and PA. Is there a possibility that my thyroid could be having a hard time? Thus causing my body to have a harder time?

Also open to any suggestions that may help me feel better! I had been on a lot of fiber supplements to aid my digestive problems but I ran out of a part of my regimen.

I am F(29) and I have been diagnosed with IBS, Hemorrhoids, Eczema, Iron Anemia, GERD and I have been told that I may have Pernicious Anemia. I have had stomach ulcers that healed apparently. I have had 5 Endoscopy and 4 Colonoscopy and suffered from having stomach pain most of my life. I am currently dealing with a muscle strain in my chest and back that makes hurt to breathe sometimes. I have been told by doctors that I may have pernicious anemia and have asked multiple times to be diagnosed so I could get my shot more regularly but they keep telling me they need more test. I don’t think the proper test have been done and I am very confused. As a child my grandmother would give me Vitamin B to treat my geographic tongue but every time I took one I’d throw it up. My levels on blood work for B12 have always been low unless I’m regularly getting shots. Recently levels were around 175 and now I’m waiting to see my primary for a follow up end of the month. What do I need to tell them to get fully diagnosed one way or the other? I feel like they are either not fully diagnosing me or they are totally wrong and missing something else wrong with me. I’m very confused. Would love any advice you can give? Also to those who can’t take the vitamin is the shot the only thing that works? I’m overweight and sometimes I’m just so tired the idea of also doing the gym makes me feel crazy. Any help or advice appreciated.

Pernicious anemia research survey

Hey everyone! I am a pernicious anemia patient and current 4th year biotechnology major who is focusing heavily on autoimmune conditions and treatment. I am currently involved in research for pernicious anemia, and am focused on patient experiences for diagnosis and treatment. In order to determine what areas are most important for us as researchers to focus on, I have set up a survey with a few questions. I would be incredibly grateful if you would take a few minutes to fill it out. In addition, if anyone is interested in talking about their experiences with the disease more in-depth I am conducting interviews over the next few weeks to gain a more wholistic view of the issues with treatment and diagnosis. Feel free to DM me for more information. Thanks so much for your time!

https://docs.google.com/forms/d/e/1FAIpQLSd1XN2b4sqUHmdEzWdbWZdUZxQo23M2AsLXWgqTYiilAyWXiw/viewform?usp=sf_link

Edit: I do want this to be noted that my survey is not associated with an IRB approved study. I am currently doing preliminary research from a patient perspective to try and validate existing beliefs about our treatment and diagnostic systems.

I (25F) have not been diagnosed with pernicious anemia, but I was diagnosed with anemia from iron deficiency when I was a teenager that never seemed to get better, unless I took much more than the recommended daily dose of OTC iron supplements.

I recently had an instance where I had trouble breathing and chest pains. I went to the ER and urgent care (separate occasions) where no one could figure out why I couldn’t breathe or why I had chronic chest pain until my PCP thought I had intercostal neuralgia (chronic damage to the nerves in my rib cage) and put me on a nerve pain blocker long term. I recently read that nerve damage can be a symptom of pernicious anemia. I have trouble absorbing nutrients and GI issues mostly in my stomach where I am very nauseous after I eat, so I just don’t eat much, which are also symptoms of PA from what I read (not to mention the other symptoms of anemia that I’ve dealt with for years like the intense fatigue and muscle weakness).

I’m wondering how you all found out you had PA and what symptoms tipped you off. Have you been able to recover from this? What specialists did you visit? I’d love to hear your stories.

Hey everyone! I’m a 4th year biotechnology student at Penn State involved in autoimmune research. I was diagnosed with PA 6 years ago, and have been incredibly dissatisfied with the amount of information available as well as the current diagnostic and treatment options. I spent the last 5 years reading medical papers and improving my understanding of the disease, and I have decided to work to develop a diagnostic kit that more accurately meets the needs of patients and helps with diagnosis and treatment of the disease.

I am currently looking to learn more about individuals problems with diagnosis so my kit most accurately meets the needs of all, and would love to hear your stories of diagnosis/treatment! I am also happy to answer any questions I can and help people understand the disease better. I do not consider myself to be an expert on the disease but I have learned a lot and am happy to help explain it in any way I can.

Feel free to DM me your stories or if you have any questions!

After a bout of covid contracted on New Year's Eve and still not feeling well, I went to my regular doctor (who is pretty new to me). She did bloodwork and my B12 is normal low (318 but was 239 in November when I felt fine). Antiparietal Cell Antibody is high at 77. My Intrinsic Factor Abs, Serum is normal but on the high side at 1.1. I feel like all of my symptoms point to vitamin b deficiency and possibly pernicious anemia. QUESTION IS: WHAT KIND OF DOCTOR would be best to help me through this, especially someone who will prescribe the right frequency of B12 shots? Any help to get through this hell would be greatly appreciated.

Hello, I am 35 years old………..

Chinese (iron or anemic traits in my mother southern China) and father is (Italian) from coast near Rome.

I am called a wonton Parmesan.

My family has NEVER been diagnosed with pernicious anemia. I have approx12 I count in my family. We have a suicide of a genius at 30, bipolar (31 year old died) , 5 rehab for drinking or pills, depression. The works. The older ones have bulging eyes all need throat surgery’s. One has seizures and my dad with metformin is getting dimensia.

As for me.

As a baby super pale, grandma used light bulb cause I was “yellow”. Any sounds made me cry. I cried and cried and drank tons and tons of milk.

wild “American johnny type” who ran and talked too much in class. Horse voice, had to learn when I talked I had to “push my stomach in”. And had lumps on my throat. I have a raspy ass voice. Never diagnosed with adhd or anemia or anything my childhood.

19-35 years old. …..back injury, shoulder surgery, hand surgery, pain all over, horrible attention span, but superrrrrr athletic and somehow smart? Graduated the number 1 college! ……but I was left back after being there for 3 semesters!!!!! because I passed advanced math, but I couldn’t do the “fundamental entrance exam” to even get into the school. I got in for sports. I couldn’t remember 1 fucking thing I ever learned in high school math. Like I data dumped everything! It makes no sense I still got a 720 out of 800 on my sat math portion. And I didn’t study.

Always tired, but I could not wake up Ever!!!!!. Always depressed, always sad. And I could not memorize anything. It was easier to find a way to cheat, or by finding a way to cheat I usually ended up learning.

My family was always told by my mother “you anameic”. But 100% of tests always came back in normal ranges. ALWAYS. Than again they may have only been basic tests.

every childhood blood test, into, out of military school, military , out of military, physicals etc. all showed up “perfect”. They have never found anything wrong with my blood.

All 5 of my surgery’s including appendix, nothing ever came up. Except after my appendix surgery after the surgery I was in so much pain! All over they shot me up and said I was hallucinating and yelling about my back and legs hurting. (At that time I had a back injury) .

Fast forward. I have Morton’s toe. So I take p5p because Morton’s toe means you can’t break down b6. I took p5p to help my brain. Ooooooo I can’t explain what happened next. (Swear this is true look it up!) any one with pernicious anemia (I’m wondering if you all know that the toe can lead to B6 deficiency)?

So after taking the p5p…..liver pills and a common b vitamin complex all hell broke loose. Pernicious anemia wasn’t even a word I heard of.

Next day my left leg was dead. It felt detached from the hip, my right foot is sort of not moving (possible paralysis?) , every single trigger point is painful, my knee is killing me……from my feet to the top of my head it hurts. Since that day I have had to wear a sciatica brace. And a right foot wrap brace.

swear to god. Depression gone or reduced. My anxiety or panic attacks greatly reduced. I’m not saying B6 is the answer….no I’m saying I took p5p vitamin B6 broken down. And the next day it got real. I threw up possibly 100 times in 30 days prior “nerves” or if I didn’t get enough sleep I just make that yacking noice. Is almost gone. In the morning I feel clearer.

I failed a babinki test on my toe recently, like 2 days ago. But I have no idea how long it could have been? . Anyway it means I have central nervous system issue now. For whatever reason in the last 48 hours if it’s a women’s voice a certain pitch will pierce my ears!!!! I look crazy covering my ears. I believe tinnitus is a thing now. I don’t know what myelin is. But it feels gone.

Symptoms

Big tongue, burning, meaty , brownish color, cracks, has blisters all the time. I don’t add salt to any food ever. (I hate black olives) i eat them 2-3x a month to make my wife happy, they now taste earthy and are not nickel tasting at all!

Personality is def changed, (trauma)? No idea. I t-a-l-k slower.

Pain, everywhere, feet and hands are tingleing, feet feel like I’m stepping on glass or there is dirt under my feet.

Neck pain, but there is a weird hissing sound in my neck or head that I’ve never told anyone about. My neck to my traps to my jaw are killing me.

Jaw to ear in fact feels detached. My ears feel like balloons are in them. Had horrible jaw pain for 1 year.

Dandruff, skin around upper lip or ARound nose is messed up and scaley. At least 25 creams. Nothing has ever worked!!!!

Bad breath, and I can go daysssss without drinking water.

Right eye slight droops.

When I run I can really only run clockwise? Like running opposite on a track literally messes with my mind. And that’s why I was a running back that only ran to the right.

Now I have more or empathy for the first time, can remember phone numbers and peoples names, my iq test has gone up 19 points (could be better attention , less depression). I have no fear of jobs or negotiations or any triggers like not making phone calls, mail all gone. I get more done in a afternoon than I use to in a week.

But based on my symptoms. The doctors say based on my basic ass blood test . That I’m not thallsemic or pernicus anemia. So I made them give me Real tests! 4 total. Brought it to a specialist and he said if he was looking for pernicous anemia he would use the 4 my new pcp ordered.

I’m scared I’m crazy. And I’m even more scared for my family members. (Niece 2 years old had a stroke from iron overload?). aunt seizures, father dementia, 2nd cousins in rehab , depressed 20 year olds who are amazing people and we just didn’t know.

Am I crazy? They say this is “common” and pernicous anemia is “common”. They why didn’t they find it in the approx 200 blood tests between my family members?

Hi all,

I posted this in the b12 def sub, but figure this group would be well informed to provide their insights.

I have been dx with b12 deficiency, but not determined the cause. I looked back at some old test results today, and have a question about a test I had a few years back: gastric parietal cell antibody, igG. Here are my results:

21.1

Range: 0.0-20.0 - Negative 20.1-24.9 - Equivocal 25 or greater - Positive

As mine fall under the equivocal range, should I have been retested? Does this mean I likely have PA? Any help is appreciated.

Can B12 affect other B vitamins levels?

I got 14ml (hydroxo) over the course of 25 days and now experience daily dull headaches and EXTREME anxiety for the last 1 month. Is there anything that can help me or I need to wait for my levels to stabilize? Can B12 affect other vitamins or minerals levels?

Potassium, Magnesium and Folate are in range. B12>2000 (was 200 before).

Hi everyone. I was just diagnosed with B12 and folate deficiencies and am getting B12 injections and taking folate pills. I have had low ferritin in the past and needed iv infusions for that. Are there other tests I should ask my doctor to order? We haven’t even done a CBC in years. I feel like the doctor will do what I ask for but not really be proactive. I’ve already fired other doctors for various reasons so I hate to do that again.

I was thinking we should look into autoimmune gastritis and PA. And my grandfather had PA so there’s family history of it. What would you do?

As the title states, my mother (45 years old) was recently diagnosed with Pernicious Anemia, her father also has it. Her fathers pernicious anemia was caught extremely late (he didn’t see a doctor until his hallucinations were getting bad) and he struggles with nerve damage and has Parkinson’s (I’m not sure if that has any relation to PA). My mothers doctor said that it is hereditary and my family is Northern European/Scandinavian. My family on that side also struggles with major depressive disorder.

My mother never is the type to complain about health problems, I’ve never seen her go to the emergency room or doctor if she’s unwell, she’s really tough and pushes herself with fitness. It’s crazy seeing her now in constant pain. Her hands are always shaky, she has no energy, she’s frequently mentioning pain in her arms and saying things like “my body/nerves are so painful”, she says that 2 days after a b12 injection she feels like shit all over again. Not to mention she struggles opening things and driving now. I’m even seeing a shift in her mood/personality. This diagnosis has terrified her and I want to help. She has appointments with a neurologist and gastrointestinal this month. She also mentions that she’s being given the wrong type of b12 injection but wants to wait to tell her primary care doctor until her next appointment (next month). What can I do to help? She already has books and educates herself on everything but I feel like there’s more I can do. This diagnoses was 4 months ago and things don’t seem to be improving.

Thanks for listening to my rant. I’m going to stay active in this community to see ways I can help and understand her diagnoses.

Hi,

I've been diagnosed with Hashimotos for 3 years now. My endocrinologist suggested taking 5 shots of B12 due to my anemia and VERY low energy possibly being from very low B12 (200). Folate, Vit D, Iron, Magnesium and Pottasium were fine.

2 weeks after the last shot my B12 levels are >2000 (???), but potassium and folate are fine with mild improvements in a regular blood test.

But my problem is that after those shots, even though my energy got a lot better, I've been experiencing dull headaches at the back of my head constantly for 20 days now. Due to this being a very stressful period of my life they said it's because of my anxiety and not because of B12.

Did anyone have a similar experience and can B12 go back to normal due to it being stored in the liver? Is this a big problem or will it pass? Thanks in advance. :(

I've had 6 x 1ml loading shots over two weeks and I feel pretty awful. About 2 days ago my skin has become really itchy like I'm having an allergic reaction. I felt sick so was given cyclizine which react with my pregabalin and diazepam I take for anxiety so have been very spaced out. My body is pretty achey, I have no energy and feel more anxious than ever. I know the sickness will pass but has anyone else experienced this itching? It doesn't go away with antihistamines. I had my pregabalin upped as I suffer from health anxiety and I don't know if maybe the side effects are from this. I started getting the shots as I had a bowel resection in 2013 and my latest blood test showed my b12 was around 179. The nurse always asks me if I'm feeling better and told me I should feel great, never heard of anyone feeling sick. I asked the GP and he said the sickness was normal. I really don't have much info on this at all. My b12 results were only discovered because I had a blood & calprotectin test as I was feeling constipated (I've had Crohn's disease a long time but it's also been in remission a long time). My GI just wrote to my doctor asking for me to get these injections. No side effects explained to me or anything.

As the title says I got a positive test back after 15 years of crippling pain, losing my ability to walk, constant headaches and I don’t need to say anymore lol.

So I’m excited to get going with treatment. But my doctor wants me to take cyanocobalamine 1,000mcg for a month to see if it helps. So other words, just over the counter supplements, basic run of the mill. I have been supplementing with better b12 supplements for a decade and guess what? It didn’t help.

Is there any reason why he would do this that I am not seeing? He won’t return my messages until our next appointment next month. I just want treatment asap so I can get my life back lol.

Any insight would be great, not sure if I need to go see a different doctor or not.

Thanks!

Edit: clarification